Hi Wiz.
Actually, I'm doing rather well. I don't know if my problem is the PD or the
way it is interacting with my Spinal Muscular Atrophy. None of my doctors
know either. I am the first person they have seen with both of these
problems. Probably because the SMA produces fatal complications before most
people get old enough for PD to show up.
Here is a rather rambleing description of what is going on in my head. let
me know what you think.
I am taking the following:
Sinemet 25/250 X 4 (1/2 tablet at 2 hr. intervals beginning at 7:00am)
a half tablet is saved to be taken 1 hr before
bedtime.
Sinemet CR 50/200 1 tablet taken at bedtime.
Paralleled 2.5 mg X 3 (1/2 tablet with every other dose of sinemet)
Eldepryl 5mg x 2 one when I get up and one around noon.
I have been diagnosed with PD for five years.
#parkinsons was started four years ago.
After looking at my med schedule and doing a bit of math you will realize
that I am not taking enough meds to make it through the entire day.
I have chosen to be "off" from around 7:00 pm until around 11:00pm.
I am still working at what has been and still is a high stress job, although
I and my employer have done much to reduce this stress.
My employer knows I have PD and all that this means. I have chosen to be
honest
with my employer and they have chosen to retain me because I am still doing
my job
and I have knowledge and experience they do not want to lose.
I work at home two days a week and my employer has offered to extend that to
as many days as I feel necessary.
I am a software engineer.....a computer programmer, working with the big
computers
not personal computers, although I have not a little skill programming pc's
as well.
My problem is not the stress, although it does play a major role in this
drama.
My problem is with concentration. I have no problem concentrating on
something
but I have found that the harder I concentrate on something the faster I use
up the
sinemet. Reading a book, watching TV, responding to email, watching pretty
ladies,
day dreaming, planning the day's activities, all of these require varying
amounts of concentration. The more concentration, the more sinemet is used.
If the activity envelopes physical activity as well, then the sinemet goes
even faster.
It goes without saying that I concentrate very hard while I'm working. The 2
hour med schedule just barely gets me through an eight hour work day. On a
good day,I have a bit left over at the end of those eight hours. On a bad
day, there is nothing left.
On a real bad day, my wife gets a call from me or my manager in the middle
of the afternoon.
What do I mean by nothing left at the end of the day?
I can sit upright because the armrests of my powered wheelchair prevent me
from falling to the side. But if I try to talk, type, read, eat, or do
anything else that demands that I pay attention I start tilting forward.
Lifting my hands high enough to touch the computer key board requires the
mental and physical effort a normal person uses to lift five pounds to
shoulder level, at least that's how it feels to me. Responding to computer
conversations requires intense mental effort and typing a response feels
like my fingers are encased in molasses.
I do not watch TV in the evenings because if I do I won't have enough
Sinemet in my system to stop the shakes so I can go to sleep. I do not eat
supper after 7:00pm because there will not be enough time between eating and
the final sinemet dose of the day for it to let me go to sleep. In fact,
when I started writing this response I knew I was going to have a sleepless
night. The concentration required is burning
burning up reserves. Sometimes that cannot be helped.
In short, the harder I think about something, the faster I use up the
sinemet,even when no physical activity is required.
Something had to be dropped so I could have something left for other things
I want to do. I don't want to stop doing any of them, but I have to make a
choice.
I rarely do more than skim over the subjects on the mailing list.
Occasionally something will catch my interest. But I usually select all and
hit the delete key.
I agree with KG, the list has become a bit too whinny for my taste. I
thought about unsubscribing, but KG says it is still a good resource tool.
The #parkinsons channel has dropped inactivity over the past year, mostly
because
I have not been there as a continuing presence. This may seem a bit
pretensious,
but that is a channel manager's job and have not been doing it.
I want to continue making silver jewelry and I cannot do both of these
things even though I have fought hard to do so.
I laid awake crying the night after I made that decision. KG had to type the
letter for me as the emotions envolved made it impossible to stop shaking.
I will continue to drop in when the meds allow. I simply can no longer give
#parkinsons the sinemet it requires to keep it going.
Marvin Giles.
-----Original Message-----
From: Joyce Saylor <[log in to unmask]>
To: M. Giles <[log in to unmask]>
Date: Friday, June 04, 1999 8:38 AM
Subject: Re: #parkinsons: IMPORTANT INFORMATION
>PUP! I've missed you tremendously!
>
>Has the channel been seeing much activity lately? I've seldom been able to
>catch anyone on there myself (though I keep looking). I'm hoping that
>someone will take over for you, if no one else volunteers and if you think
>it worthwhile to keep the channel going...I can try to take over for you
>myself. (Hey the channel has meant a lot to me).
>
>Give me a holler and let me know how YOU are doing!!
>
>joyce aka Manderwiz
>
>At 12:48 AM 06/04/1999 -0500, you wrote:
>>Dear friends,
>> The time has come when I have to make choices about how I allocate my
>>resources. I no longer have the on time available to do the maintenance
>>required to keep up the Parkinsons channel . I have logged on to
>>#parkinsons as channel manger for the last time as of June 3, 1999. Unless
>>someone applies to re-register the channel in their name, the channel will
>>revert to an unregistered status in two to three weeks, and will no longer
>>be held open by the channel bot "W". If you are interested in assuming
the
>>responsibilities of channel manager, contact me by e-mail, and I will
>>provide what information I can.
>>
>>Marvin W. Giles
>>WerBeagle
>>[log in to unmask]
>>
>>
>>
>>
>>
>>
>
>
>
>
>
>"This life is a test. It is only a test. Had it been an actual life, you
>would have received further instructions on where to go and what to do ....
"
>
>
